Baskind Roy, Birbeck Gretchen L
Department of Neurology and Neurosurgery, McGill University, Montreal, Quebec, Canada.
Epilepsy Behav. 2005 Aug;7(1):68-73. doi: 10.1016/j.yebeh.2005.04.009.
Many studies in developed regions of the world have confirmed that stigma contributes substantially to the psychological and social burden of epilepsy. Relatively few studies of epilepsy-associated stigma have been conducted in Africa, where much of the world's burden of epilepsy exists. In sub-Saharan Africa (SSA), particularly in rural regions, close family ties, communal living situations, and traditional belief systems undoubtedly influence the expression of stigmatization. A review of the epidemiologic, anthropologic, and sociologic studies of epilepsy in SSA provides significant insights into how people with epilepsy (PWE) are perceived by their communities and families and how these perceptions translate into limited social and economic opportunities and possibly worsen the physical vulnerability of PWE in this region. The medical community is not exempt from the social process of stigmatization, and poor public health infrastructure and medical services undoubtedly contribute to the cycle of epilepsy-associated stigma through wide treatment gaps, poor seizure control, and high rates of seizure-related injury. In this review, we extrapolate data from existing studies of epilepsy in SSA coupled with our own experience providing epilepsy care in the region to give an overview of the social landscape of this common, devastating condition.
世界发达地区的许多研究证实,耻辱感在很大程度上加重了癫痫的心理和社会负担。在世界上癫痫负担很大一部分所在的非洲,针对与癫痫相关耻辱感的研究相对较少。在撒哈拉以南非洲(SSA),特别是农村地区,紧密的家庭关系、群居生活环境以及传统信仰体系无疑会影响耻辱感的表现。对SSA地区癫痫的流行病学、人类学和社会学研究进行综述,能让我们深入了解癫痫患者(PWE)在其社区和家庭中是如何被看待的,以及这些看法如何转化为有限的社会和经济机会,并可能使该地区PWE的身体脆弱性恶化。医学界也未能免予耻辱感这一社会过程的影响,而公共卫生基础设施薄弱和医疗服务不佳无疑会通过巨大的治疗差距、癫痫发作控制不佳以及癫痫发作相关损伤的高发生率,导致与癫痫相关的耻辱感循环。在本综述中,我们从SSA地区现有癫痫研究中推断数据,并结合我们自己在该地区提供癫痫护理的经验,对这种常见的、具有破坏性的疾病的社会状况进行概述。